Tag Archives: dementia

“All it takes is one song to bring back 1,000 memories”: using music therapy in dementia care

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unsplash-ipod-music

Earlier this month, it was reported that dementia had overtaken heart disease as the leading cause of death in England and Wales. And caring for those with dementia is becoming the major social care challenge of the 21st century – over 1 million people in the UK are expected to have dementia by 2021.

Despite significant research into the condition, there are no long-term cures. As a result, health and social care teams, and researchers into the health and well being of older people, have started to promote non-pharmacological ways of alleviating symptoms and reducing distress to the patient and their family.

Many of these techniques are widely accessible, require little to no formal care training and can take place either in the patient’s own home or in a care home setting. One of these techniques is the use of music as a form of therapy. While specially trained dementia and Alzheimer’s music therapists exist to give formal therapy, carers and family members can also use music to help improve the quality of life of a person suffering from dementia or Alzheimer’s.

Benefits of music therpay in dementia care

Research and experiences from practice regularly show similar outcomes when using music with dementia care patients. The benefits that are consistently highlighted include:

  • Music evokes emotion – and this in turn can evoke memories which can help sufferers and family members to connect together.
  • Musical aptitude and appreciation are two of the last remaining abilities in dementia patients – it is one of the first cognitive skills we develop as new-born children and is one of the last things to leave us in degenerative cognitive diseases.
  • Music can bring an emotional and physical closeness – the association that a patient makes with a song can encourage them to complete actions such as dancing or hugging which they associate with that piece of music. It can also enhance feelings of security and safety among vulnerable patients.
  • Singing can be used as a way to engage and to encourage people to express feelings, even if it does not include words or sentences. It can be a way to encourage participation and socialisation, as well as stimulating brain activity, dexterity and physical activity if actions are also introduced to go along with the words.
  • Music has been proven to stimulate the release of hormones which gives it the ability to shift mood and manage stress.

“Come fly with me … Let’s make a cup of tea”

One project from Purple Angel music has rewritten and altered the lyrics to some well-known songs which are loaded onto an iPod and can be placed in a person’s home to remind them to carry out day-to-day tasks such as eating and drinking, locking their front door, turning off their fire and showering.

The pre-loaded iPod, which comes in a number of musical genres, contains two 12-hour tracks – one which plays the lyrically-amended songs at two hour intervals throughout the day to act as a reminder service, and the other which is 12 hours of silence, designed to allow the patient to sleep without having to remember to turn off the iPod.

Examples of the altered tracks include:

  • L.O.V.E,  I’d love a cup of tea – a song to encourage rehydration via a cup of tea
  • That’s Amore, That’s a bath day – a song to encourage taking a shower or bath
  • Let There be Love, Let there be lunch – a song to encourage eating
  • Can’t take my eyes off of you – a song to encourage night time requirements, like locking the door and turning off the fire.

A playlist for life

In August 2016, the Care Inspectorate backed a scheme called ‘playlist for life’ which encourages care homes to integrate music into their care for patients with dementia. Moving beyond just allocating a time to place headphones onto a patient and leaving them to listen alone (although at times this may be helpful too), the aim is for music to be a vehicle for connected care. It allows carers to use music as a tool to find out more about the person they are caring for and encourage them to engage through the music.

“Music can reveal previously hidden aspects of the patients to their carers; likes and dislikes, talents and memories – it all helps piece together the jigsaw of an identity obscured by illness.”

As the video above shows, using music can also be a way for family members to re-engage with the person suffering from dementia. It also  allows them to feel like they are directly involved in a positive element of care, as they are often invited to create the playlist, using songs that they know will evoke specific memories or emotions for the patient, and then listen along with them, interacting as they do so.

Similarly, Music for Life, a project run jointly by London’s Wigmore Hall and the charity Dementia UK brings specially trained musicians into care homes to work with patients, carers and family members in group and 1-2-1 sessions, creating and listening to music. Musicians, care home staff and managers meet after each session to reflect on what they have learned about the patients – knowledge that helps in future care and treatment.

Music as a communication tool

Formal research has supported the use of forms of music therapy, whether they be formally delivered by trained specialists or integrated into day to day caring by family or social carers. As mentioned above, research has demonstrated the positive effect it can have, both on the patient but also on their family.

Over 800,000 people currently live with the condition and roughly 25 million people – nearly half the UK population – are affected by it through knowing someone with the condition.

Music offers a way to care for people suffering from dementia in a sensitive, person-centred and cost effective manner. It can also be a vital tool to support families who can reconnect with their loved ones through a piece of music, even when other forms of communication have become difficult.

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Assistive digital technology and older people: technology “bricolage” in dementia care

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A key focus of social care teams today is helping people to grow old at home, safely, with dignity and with appropriate levels of care if needed, without breaking the budget. Increasingly, local authorities are looking to advances in technology to facilitate this “growing old in place”.

Telecare packages and assistive technologies are often the preferred way for care teams to deliver social care in a home setting. And in situations where care is required around the clock (for example, support for people with dementia and other life limiting degenerative diseases), families and carers are adapting everyday technology and integrating it into their care-giving in order to supplement the telecare provided by local authorities.

Notruf und Hilfe für Rentner und Kranke

 

Bricolage in dementia and elderly care

Bricolage means adapting an object to allow it to carry out a function which was not necessarily its original intended function. Relatives who care for loved ones with dementia, often adapt everyday objects to help them with their day-to-day caring. They find new, innovative and often non-conventional ways to use technology in diverse ways.

dementia post it

One example from dementia care was a man who bought a chicken ornament with a sensor which “crowed” whenever anyone walked past it. He placed it beside the front door so that if his wife, who suffered from dementia, walked up to the door to go out, he would hear and be able to go to her.

Other examples of technology being adapted include: setting alarms and reminders on mobile devices to remind people to take medication, or using webcams to act as personal CCTV so familly carers can monitor loved ones when they go out, or go into the next room.

These examples show that objects don’t have to be digital in order to be effective. The rise in capability of digital technologies and the relative decrease in cost, however, means it is often quicker and easier for families to invest in additional technologies themselves, rather than waiting for an assessment and an allocation of additional technology from their council.

Image by Buddi

Image by Buddi

Ethical challenges

Although there may be practical motivations, some charities have expressed concern about the ethics of some of the practices regarding adaptation of digital technology to form part of an assistive care package. While they recognise the strain of caring is significant for many people, rigging up a webcam in each room to allow you to “monitor” a loved one, or attaching a GPS tracking bracelet, for example, while often done with the best of intentions, could be interpreted as a breach of human rights.

Active assistive technology (technology which requires an active call for assistance) rather than passive technology (which is constantly monitoring) may be a better way of using technology ethically. It may also be used as an additional stimulant or interactive tool to allow patients to communicate. Apps and interactive devices, such as tablet computers, can inform a carer or loved one that someone had been using the app (providing a type of reassurance and monitoring) and the activities the app promotes might also be a visual stimulant and a communicative tool. The Dementia Citizens project has adopted this method and aims to help people with dementia and those who care for them, using apps on smartphones and tablets.

Dementia Citizens from Nesta UK on Vimeo.

Final thoughts

If we are mindful of the ethical challenges of integrating more technology into care, it might be possible for families and carers to work with social care and assistive technology development teams to adapt the tools available in a more empowering way. It might also mean that the onus is not on carers and their loved ones to build what they can from the standardised telecare provided by local authorities.

Bricolage in assistive care has, for many families, become the norm without them realising it. By adapting and supplementing assistive technology, like telecare packages, with non-assistive technologies or adapted additional digital technologies, families and carers can create a bespoke and personalised care package.

In future, understanding the extent to which families and carers adapt the technology given to them, could help creat more flexible care packages which can be more easily adapted to suit individual needs.

Ecotherapy in practice: nature based mental health care

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Ecotherapy, also known as nature-based or green care is an alternative therapy for people suffering from mental health issues. It can be delivered as an individual treatment or in combination with traditional medicinal and talking-based treatments. Charities and research has suggested that it can reduce depression, anger, anxiety and stress as well as improving self-esteem and increasing emotional resilience.

Spessartbach

The mental health charity MIND emphasises the positive health benefits, commenting that ecotherapy:

  • is accessible
  • can take place in both urban and rural settings in parks, gardens, farms and woodlands
  • works through people either working in nature or experiencing nature

It can be structured or more informal, with some areas providing therapist led classes while elements of ecotherapy, such as taking walks or gardening, can also be done without specialist supervision, on your own or with family members and friends.

AAT and AAI (Animal Assisted Interventions and Animal Assisted Therapy)

This form of therapy uses guided contact with animals such as horses or dogs. It is becoming increasingly popular in university settings, with dog cafes or dog rooms during student mental health weeks or during exam times to help alleviate student exam stress. Pet therapy has also been shown to be effective with children and young people who suffer from anxiety or who have experienced trauma, and for elderly people suffering from dementia.

Therapy could be one to one or in a group and could also be delivered to people who are in residential care setting. AAT can also be used to assist mobility and coordination or simply to spend relaxed time with animals where patients can feed or pet them. This interaction can promote bonding between the individual and animal which has been found to reduce stress and anxiety.

Nature Arts and Craft Therapy

Nature based art therapy takes inspiration from nature to create and provide materials to create art work. This type of therapy can also include social and therapeutic horticulture (STH). This can be a particularly effective form of nature based intervention as it can be adapted to suit a wide range of mobility and abilities and could potentially lead to work experience or the sale of goods created, which in itself can build self-confidence and transferable skills.

Adventure Therapy

This therapy focusses on using physical activities to encourage psychological support, It includes activities such as rafting, rock climbing and caving. Often done in a group, this type of therapy aims to build trust and raise confidence. While it can be strenuous, less able individuals can take part in green exercise therapy, which largely includes walks and rambling, or wilderness therapy (which includes physical group and team activities such as making shelters and hiking).

Effectiveness of ecotherapy

In February 2016, Natural England published A review of nature-based interventions for mental health care, which considered the benefits and outcomes of approaches to green care or ecotherapy for mental ill health.

One of the main challenges the report highlights is to increase the availability of green therapies in order to make the practice more normalised within treatment. The authors also speak about the importance of standardising the use of terms such as ‘ecotherapy’, ‘green care’ and ‘nurture based interventions’ to allow people to fully understand what different interventions entail. The report makes nine recommendations, including:

  • expanding the evidence base around green therapy
  • increasing the scale of commissioning of green care initiatives
  • increasing collaboration between the green care sector and health and social care practitioners

Ecotherapy is still not widely accepted as a mainstream approach to mental health treatment. However, it is increasingly being offered as a combination therapy alongside traditional drug-or talking-based interventions. Advocates of ecotherapy hope that this will lead to wider acceptance of the approach and the positive effect it can have on people who suffer from mental ill health.

Advocates emphasise the holistic and person-centred benefits of ecotherapy, which has been shown to improve physical health as well as mental wellbeing. As the video below demonstrates, it increases social skills and in many instances can help people build new or develop existing skills which can help them enter, or re-enter employment. Potentially this may also reduce the burden on care and community mental health services.

Our popular Ask-a-Researcher enquiry service is one aspect of the Idox Information Service, which we provide to members in organisations across the UK to keep them informed on the latest research and evidence on public and social policy issues. To find out more on how to become a member, get in touch.

Follow us on Twitter to see what developments in public and social policy are interesting our research team.

Intimacy and sexuality in care homes

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Talking about sexuality and intimacy can be an awkward and, for some, taboo subject, particularly when the people we are discussing are parents or elderly relatives.

However, in a care setting, where a relative has been moved into care, sexuality, sexual needs and questions around intimacy often remain un-talked about and un-catered for, and can create an awkward situation for residents, relatives and care staff.

For many people, intimacy is a ‘normal everyday’ part of life. But when moving into residential care, for many people, that is lost. They feel their privacy is taken away and their ability to conduct life as they had before needs to change as a result of moving from their home. The onset of conditions such as dementia in later life can also make other people uneasy about the idea of continuing with intimate relationships, or indeed starting new ones later in life. One of the aims of the research conducted by a team at Manchester University on older people’s understanding of sexuality (OPUS project) is to look at erotophobia, or a fear of older people’s sexuality (within the remit of feelings and beliefs on sexuality more generally).

The loss of identity through sexual expression can be even more explicitly felt by members of the LGBT community, many of whom, studies have found, have felt the need to ‘go back into the closet’ upon entering residential care.

In 2010 the World Health Organisation (WHO) published a set of sexual rights. In this the right of the individual to choice is key and something which care homes must still respect.

Sexual rights in older people was also the subject of a report by the Royal College of Nursing who commented that “when someone moves into a care home, to all intents and purposes the private space of their room is exactly that, their private space and provided any acts are consensual care homes should facilitate the wishes of residents to the fullest extent.” Within a human rights context, adults living in residential settings, unless they have had certain rights and freedoms curtailed or restricted by the law, generally have the same basic rights and freedoms as any citizen to live their lives as they wish. This includes possibly doing things that others might consider to be unwise or inappropriate.

In addition, although many decisions about care within a care home setting are taken in consultation with the family of the resident, carers and care home managers must also remember that they have a duty to their patient, and there is a level of patient-carer confidentiality which carers should be mindful of when discussing topics such as sex, sexuality or intimacy.

However, in that context it is also the case that care home workers have a duty of care, to protect vulnerable people from abuse, exploitation and situations which they might find distressing. The International Longevity Centre have produced a guide which contains advice around intimacy and sexuality in care homes, looks at intimacy in older people, (particularly older people with dementia) and the position of people within the LGBT community who move into residential care.

Many within the LGBT community have expressed a feeling of discrimination or anxiety about their sexuality on entering residential care and as a result there are suggestions of LGBT only residential care homes being created, with one proposed for either London or Brighton in the next few years.

The legality behind many of the decisions taken in care homes is set out in law, including definitions of consent, abuse, exploitation, violence. However, the individual practices of care homes regarding policy is often set out and implemented at the discretion of care home managers and staff and it is their responsibility to ensure that they have an effective and consistent policy in place when it comes to sexuality, intimacy and relationships more generally.

They also have a responsibility to ensure that staff are suitably trained to tackle any issues which may arise, answer any questions from residents or family members and recognise boundaries and levels of appropriateness while still delivering care to residents. Care workers must balance delivering effective care with promoting personal emotional and mental well being, allowing residents a level of freedom and personal choice while ensuring adequate safeguards are in place. This is not an easy task. However, more research is currently being conducted, and improved training for staff is also being increasingly offered as the norm.

Our popular Ask-a-Researcher enquiry service is one aspect of the Idox Information Service, which we provide to members in organisations across the UK to keep them informed on the latest research and evidence on public and social policy issues. To find out more on how to become a member, get in touch.

Follow us on Twitter to see what developments in public and social policy are interesting our research team.

 

Dementia’s impact on those who care

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Old man

By Alan Gillies

Recent research has suggested that the rate of growth in the prevalence of dementia may be levelling out as the general health of the population increases. While such findings are encouraging, commentators have pointed out that increasing rates of obesity and diabetes, as well as the fact that people are living longer, means they have to be treated with caution.

Whether we face a continuing increase, a stabilisation or a decline in dementia, for those who are affected it will continue to have a devastating impact. And this includes not just the person with dementia, but also their loved ones and those who care for them.

A recent enquiry to our Ask a Researcher service asked for our help on this very question. As a social worker needing to understand the broader impacts of the disease on the family in order to be to provide appropriate help and support, the enquirer came to us looking for the available research evidence on the impacts of dementia on those caring for them. Our researcher was able to provide a comprehensive roundup of the current literature, highlighting the variety of issues facing carers of those with dementia.

Carers’ working lives

Not all the issues covered were ones that might be immediately obvious, like the practicalities of caring and the emotional impact of seeing a loved one affected. For example, one piece of research we were able to flag up examined the impact on carers’ working lives and workplace relationships.

Over half of respondents to a survey (53%) said that their work had been negatively affected due to their caring responsibilities. The survey highlighted the pressure on those in the prime of their working life, most often women, who are combining care for an older relative, often at a distance, with a range of other family responsibilities.

Minority ethnic carers

We also highlighted research on the way dementia can affect different sectors of the population. One recent study we identified, examined how the migration experiences and life histories of Sikhs living in Wolverhampton impacted on their experiences of caring for a family member with dementia and the barriers to accessing services.

It found that, rather than cultural differences, it was migrants’ experiences and perceptions of social exclusion, their perceived and actual social position as migrants, that affected the ways in which they accessed services.

Communicating with family members who have dementia

As well as drawing together a range of research on carers’ experiences and difficulties, we were able to include examples of initiatives, such as Talking Mats, which can help to improve the experience of caring for a loved one with dementia.

Talking Mats are a simple communication tool, developed at the University of Stirling, to help people with communication difficulties to express their views. It uses a simple system of picture symbols that allow people to indicate their feelings about various options relating to a topic.

Research for the Joseph Rowntree Foundation looked at their use for people with dementia and their family carers. It found that, unexpectedly, although the people with dementia and the family carers both felt more involved in discussions using Talking Mats, the increased feeling of involvement was significantly higher for the carers. Carers repeatedly reported feeling ‘listened to’ by the person with dementia and felt that their loved one could actually ‘see’ their point of view. It found that many family carers said they often choose not to say something that is going to inflame a situation, so instead they say nothing at all. Whereas the Talking Mats tool allowed them time and space to have their say, and helped to organise and structure their conversation with the person with dementia for whom they cared.

Our response to the enquiry provided our member with a speedy and concise roundup of the currently available literature on the issues and difficulties facing those who provide vital care for people with dementia.

Our popular Ask a Researcher enquiry service is one aspect of the Idox Information Service, which we provide to members in organisations across the UK to keep them informed on the latest research and evidence on public and social policy issues. To find out more on how to become a member, get in touch.

Follow us on Twitter to see what developments in public and social policy are interesting our research team.

Social labs … tackling social problems through collaboration and design

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Crossing out problems and writing solutions on a blackboard.

by Laura Dobie

Nesta’s LabWorks 2015 global lab gathering kicks off today in London, bringing together innovation labs, units, offices and teams working within and with government to address social challenges.

Today on the blog we look at social labs, their potential to improve public services and a couple of social labs who are carrying out innovative work in public services.

What are social labs?

Social labs are platforms for tackling complex social challenges.

Zaid Hassan highlights the following key characteristics of social labs:

  • They are social, facilitating participation by a broad range of stakeholders
  • They are experimental, taking an iterative approach to problem-solving
  • They are systemic, seeking to address the root cause of a problem, and not just its symptoms (Hassan, 2014, p.3)

Social labs draw inspiration from design thinking, which is centred on the following principles of design which were promoted by design firm IDEO:

  • A user-centred approach to problem solving
  • Using direct observation as a main source of learning
  • Moving quickly to creating prototypes as a means of generating additional knowledge
  • Learning from failures to refine and redevelop

Social labs in the public sector

The public sector is making increasing use of design, policy or social labs as a means of complementing and reinforcing skills in public policy, programme and service design. They contribute a different perspective to challenges and use a range of research methods and facilitation techniques to foster ideas and insights that attempt to incorporate many different points of view.

Recent Canadian research on a What Works Lab, which was established to develop approaches to increase employer engagement in workplace training, found that using lab methodology enhances the ability to generate insights into potential policy responses, and that lab techniques can also substantially reduce the transmission cycle between research, policy and service delivery. The research also highlighted how experimentation in a lab setting can be used to de-risk an initiative before wider implementation, and demonstrated that labs are an effective means of generating high-quality policy work.

Social Innovation Lab Kent (SILK)

SILK is a small team based within Kent County Council established in 2007 to ‘do policy differently’. They consider that the best solutions come from people who are at the heart of an issue, those with lived experience, families, friends, volunteers, and front line workers, and they ensure that these groups are involved at all stages their projects.

Projects are broken down into the following phases:

  • Initiate. Involve the right people, create a project plan collectively and decide who needs to be informed about the project.
  • Create. Collect as many insights as possible, involve a broad range of stakeholders and generate ideas for testing in the next phase.
  • Test. Test the ideas which were proposed during the create phase, and continue testing until a model that woks is identified. Trial runs, prototypes or ‘mock ups’ can be a part of this process.
  • Define. A model which has been tested and known to work is defined and consolidated.

SILK has delivered a variety of projects across the themes of future services, service (re)design and sustainable services, and tackled a range of social issues, including accessible and affordable food, the resettlement of offenders and creating a dementia-friendly community.

MindLab

Based in Danish central government, MindLab employs a human-centred design approach to address public sector challenges. Its board sets its strategic direction and approves its portfolio of projects, ensuring that their work is aligned with their sponsors’ priorities. Its emphasis on human-centred design helps to forge links between the perspectives of end users and government decision making.

MindLab’s team has a variety of skills which are indicative of its ethos and method, including social research, design, public administration, project management, organisational development and creative facilitation.

In one project MindLab worked with National Board of Industrial Injuries (ASK) to increase the number of people who remain in employment after suffering an injury at work. MindLab highlighted the potential in strategic working across working across public, private and non-governmental organisations and a change in attitude in helping these people return to the labour market.

MindLab interviewed people who had suffered industrial injuries and put together service journeys, which mapped the different stakeholders involved in a work injury case from a citizen’s perspective. They demonstrated through a case study how cooperation between the municipality, the insurance company and ASK improved an injured person’s employment prospects. MindLab also conducted internal workshops with ASK management to support a change in strategic focus from case resolution to employment outcomes for injured people.

It is clear that social labs are taking a different approach to policy and service delivery, focusing on the experiences and needs of service users to devise innovative solutions to a range of social challenges.

The Idox Information Service can give you access to a wealth of information on economic and social policy and public service delivery. To find out more on how to become a member, contact us.

Further reading

Hassan, Zaid (2014). The social revolution: a new approach to solving out most complex challenges. San Francisco: Berrett-Koehler Publishers, Inc. (Available for loan from the Idox Information Service Library)

The What Works Lab process: report for the Skills and Employment Branch, Employment and Social Development Canada

World Alzheimer’s Day: can we reduce dementia risk?

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Older woman with Alzheimer's in a chair

Image courtesy of Flickr user Vince Alongi using a Creative Commons license

By Steven McGinty

On the 21st September, Alzheimer’s organisations across the world will be carrying out events to raise awareness about Alzheimer’s and dementia. The event, a key part of World Alzheimer’s Month, was launched by Alzheimer’s Disease International (ADI) in 1994, with the aim of highlighting the tremendous work carried out by Alzheimer’s organisations.

Each year, a new theme is selected for World Alzheimer’s Month, and this year the focus will be on how we can reduce the risks of developing Alzheimer’s and dementia. In support of this event, I’ve decided to look at some of the statistics on dementia, as well as review the latest evidence on reducing the risks.

Continue reading →

How should we address loneliness and social isolation among older people?

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For elderly men sitting on a bench

Image courtesy of http://goo.gl/A8ykMA using a Creative Commons licence.

By Steven McGinty

“Loneliness and the feeling of being unwanted, is the most terrible poverty“– Mother Teresa

Yet, for many older people, loneliness and social isolation are the normal state of affairs. A recent study by the Office for National Statistics (ONS) found that 34% of people aged 52 and over felt lonely often or sometimes, with this figure reaching 46% for people aged 80 or over. Rather worryingly, a report by Age UK also suggested that over half of older people consider the television as their main source of company.

In many respects, these figures may not be too surprising, with some arguing that this is simply the by-product of changing societal attitudes. Conversely, it could also be said that these changes are a response to the demands of busy modern life. For example, a report published by the Royal Voluntary Service highlights that, because of uncertainty in the job market, many children have to move away from their parents for work reasons. The impact of this is that many older people are seeing their families less and less, with 48% of parents only seeing their children once every two to six months. Continue reading →

Dementia – the new normal?

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elderly woman reading to children

by Alan Gillies

A report published last week by dementia care specialists Red & Yellow Care, in association with the Alzheimer’s Society, argues that the stigma attached to dementia is getting in the way of people with the condition living their lives, as they are “deflated by the ‘nothing can be done’ attitudes of hopelessness that pervade not just public, but some professional attitudes”. Continue reading →